Autoimmune disorder

[sportynik]

I was diagnosed with Hashimoto's disease awhile ago. I was put on 150 mg of pulse steroids to help it and then 60 mg of steroids every day for eight weeks. I am having neuropathic pain in my legs from the hip down that is a sharp needle sensation, bad headaches, back pain, dizziness, stiffness in hands,and  chest pain and pressure that feels like my chest just caved in. I am also drinking lots of water and I am really dry in the mouth all the time. My lips are always dry also as well as my skin. My contacts don't stay in my eyes because they are so dry. I also have sores in my ears. I also have trouble thinking and remembering and I cannot concentrate. My doctor's cannot find what other autoimmune disorder that is going on with me because of the steroids. I am getting taken off the steroids slowly. I have also just been diagnosed with steroid myopathy. Do you know what I could have? What are side effects of steroids?

[sportynik]

Thank you I will try doing that sometime when I am able to use my hands better.

[finepickle]

Hi Sportynik,

I can't think of anything right now, except is good to have a hobby.  I do art sometimes, drawing and painting.  If you want a good hobby, I think art is a fun one to do.  Drawing and painting are a great way to unwind and relax.  Anyhow, just a random thought.

Take care!

[sportynik]

Thanks again. I do have digestion problems like trouble swallowing and pain in my chest when it is going down. Thank you again for more sites that will help me. Do you have any other advice that would help me?

[finepickle]

Hi Sportynik,

The trick is, that many times people with celiac have another immune disease also.  So, sorting out what disease is causing what symptom can be a little tricky.  The main symptoms I have that are obviously celiac related are digestive = diahhrea, constipation, gas.  The less obvious things are malabsorbtion of nutrients.  The small intestine is where the nutrients in your food are absorbed.  Since the intestines are damaged in celiac, they can't absorb nutrients (vitamins, minerals etc) like they should.  This leads to secondary problems such as nerve damage from vitamin deficiency, anemia, osteoporosis.  Do you have any digestion type symptoms?  The rub is, that some people don't have any of the digestion problems, but still have celiac.  It's kind of tricky that way.

I have thyroiditis also, and that causes it's own range of symptoms.  Since celiac is often cobined with other autoimmune disease, they also contribute their symptoms.  Those symptoms depend on the disease.  There are quite a few related diseases, each with it's own symptoms.

I was thinking it might be helpful for you to visit another forum I read on celiac disease.  They have a section for related conditions, and someone may be able to talk to you about lupus symptoms.  They also have a section for teenagers with celiac.

Here is the related disorders section link:
http://www.****.***

[sportynik]

Hi finepickle, I was wondering if you knew anything about other autoimmune disorders. With celiac disease are you really weak, unable to walk without a walker, joint and muscle pain, bad back pain, bad headaches, dizziness, blood pressure changes from lying sitting and standing, fast heartrate, and the other symptoms I told you about? Do you know anything about lyme disease? Sorry to bother you again. I am not really sure if I have celiac but I know I have something autoimmune. With celiac disease what happens to your body? Are there any risks with celiac disease? If you can help me I would really like it. Thank you.

[sportynik]

Thanks for all your help and all the information. I will see what my mom thinks and my doctor and will think about trying it.

[finepickle]

Hi Sportynik,

You can eat bread and pizza but it has to be gluten free bread and pizza.  GF bread and pizza is available in many stores now.  I don't know about desensitization.  I know some celiacs get numbness from nerve damage, and other nerve symptoms.

Here are a couple of lupus forums where there might be some people who can help.

The Lupus Site forum:
http://www.thelupussite.com/forum/forumdisplay.php?f=34

Lupus Foundation of America forum:
http://ft003159.fusetalkcommunity.com/index.cfm?nocookies=yes

I did want to let you know that the celiac testing is not perfect.  Some people have tests and they don't show anything, but they still get better after going on the GF diet.

If you do want to try it sometime, the easiest thing is to start with a very basic diet of rice and veggies, with chicken or beef, with just salt and pepper.  I make big batches of rice on the weekends, and freeze most of it.  Then I can take out a freezer bag of rice and thaw it during the week.  I have several varieties frozen so I can have different kinds of rice.  The reason to do it this way is that you don't have to spend a whole lot of time reading labels in the grocery store, and worrying about ingredients.  If you eat a basic diet like this for a month you will probably be able to tell a difference if you have celiac or gluten sensititvity.  You do need to be sure to eliminate any gluten, so that means checking all vitamins and medicines for gluten also.  Gluten is sometimes used as a binder in pills.  McCormick single ingredient spices are GF, but you always need to check the labels.  Many celiac people are on gluten free, casien (milk protein) free, and soy free diets.  Some also have problems with nightshades, (tomatoes, peppers, potatoes, eggplant).  If you do a very simple diet, you can test for reactions by adding 1 new food every other day.  Wait a couple days and then if you don't have a negative reaction, add another food.  Of course if the added food is causing a reaction you would out it on the bad list.  This is a good way to test for food intolerances.  It is called an elimination diet, because you add things one at a time and eliminate the ones that cause problems.  I used an elimination diet to find out I Was lactose intolerant 12 years ago.  So, just something to think about trying.

[sportynik]

Hi finepickle, I am not sure if you can help me or not because this doesn't go really with celiac disease well I guess it can. I was wondering since I have awful neuropathic pain. What does desencitization do to help them? Also with celiac disease can you still eat bread and pizza and other stuff like that?

[sportynik]

Thank you for all your help. You have answered a bunch of my questions. I will talk to my doctor's about doing the test panel for celiac disease. If you have any other advice please let me know. Thanks.

[finepickle]

Hi Sportynik,

Yep, the diet is a life long thing.  It is not bad though, the food is better for you than what most people eat.  There are a lot of gluten free foods in stores these days too.  I make mostly rice and veggies with some kind of meat.  Corn chips are ok and corn tortillas. There are some restaraunts that have GF foods now also.

[sportynik]

Thank you for your help. Ya I have done research and lupus is related to celiac disease. I will talk to my mom about us asking the doctors to do the test panel. My dad has hyperthyroidism and my mom used to but it is fixed, and my aunt has antiphospolipid syndrome and lupus. Do you have to stay on the diet for your whole life if you have celiac?

[finepickle]

Hi Sportynik,

Well, surprise!  I found another list of diseases related to celiac.  This one is from the NIH site National Digestive Disease Information Clearinghouse NDDIC.  They include lupus as one of the related diseases!

Please do consider getting a full celiac test panel done.  If you do turn out to have celiac, the good news is that it is easily treated by changing your diet.  Since celiac is a genetic condition, it is often true that other people in the celiac person's family will have celiac, or other auto-immune diseases.  You might want to ask your mom about that.  If there is a history of any of the related diseases.  In my family two of my uncles had colon cancer, my younger brother had crohn's disease, my dad had diabetes, my sister has endometriosis, and my dog had fleas!  Well, maybe that last one doesn't count.  :-)  It's great that your mom is a nurse, she can really help you a lot!

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#8
Diseases Linked to Celiac Disease

People with celiac disease tend to have other autoimmune diseases. The connection between celiac disease and these diseases may be genetic. These diseases include

    * thyroid disease
    * systemic lupus erythematosus  ******
    * type 1 diabetes
    * liver disease
    * collagen vascular disease
    * rheumatoid arthritis
    * Sjögren’s syndrome

Hey, no you didn't bother me.  I am glad to try and help.  I had to go 12 years before finding out  I had celiac.  That is not unusual in celiac.  My doctors just didn't think of it.  It is slowly becoming more widely known now.  But still a lot of doctors don't test people for it when they should.

[sportynik]

Hi finepickle,  Thank you so much for all of your help and I hope I didn't bother you. My parents are totally aware of what is going on but we don;t want to do anything different till we talk to my doctor in a couple weeks. My mom also is a nurse so she knows alot about what is going on she also think I might have sjogren's disease and they tested me but we still haven't found out what the results are. Right now we are just doing research and waiting to see because of my steroids we don't want anything else to go wrong. Me and my mom think I have lupus and my doctor's do too but we can't find it because of the steroids right now. Do you have any other advice for me?

[finepickle]

Hi Sportynik,

Good to hear you are taking a B supplement.  The doctor can test your blood for vitamin deficiencies.  I don't have any other auto-immune disease besides the Hashi's.  It has taken many months for me to feel better after going gluten free.  I started feeling better within a few weeks, but it took months for me to learn how to avoid eating gluten.  

Here is some info from the National Foundation for Celiac Awareness site.

This is a list of test for celiac that doctors do to find the different antibodies.

http://www.celiaccentral.org/What_is_Celiac_/Related_Diseases/98/

    * Total IgA
    * IgA antitissue transglutaminase (tTG)
    * IgA antiendomysial antibody immunofluorescence (EMA)
    * If IgA is deficient, IgG tTG test should also be ordered. At the discretion of the doctor, antigliaden IgG can also be ordered.

This is a list of related auto-immune disease that people with celiac tend to get, also from the NFCA site.  Some people get onf of these, or two, or more.  It kind of depends on each person, and one of the factors is how long they have had celiac and kept eating gluten.  Once people stop eating it, they tend to get better, but it is not that all their autoimmune diseases go away.  They just don't tend to get worse.

Related Diseases

People with Celiac Disease often suffer from other illnesses, such as:

    * Autism
    * Dermatitis Herpetiformis
    * Type 1 Diabetes
    * Thyroid Disease
    * Infertility
    * Osteoporosis/Osteopenia
    * Depression
    * Sjogren's Disease
    * Juvenile Idiopathic Arthritis
    * Intestinal Cancer
    * Peripheral Neuropathy
    * Down Syndrome
    * Turner Syndrome
    * Williams Syndrome
    * Liver Disease
    * Migraine


I think you are wise to do reasearch on your condition.  Please don't make any changes to what you are doing for your health/diet etc without talking to your parents first and getting their approval.  They need to know what is going on with you so they can help you.

[sportynik]

How do you know if you have poor food nutrient absorbtion? I am taking a B-12 supplement right now and have been for a long time but that isn't helping me. Did you notice a difference after you started taking the B-12 supplement?

[sportynik]

Hi finepickle,
        No I have not tried the gluten free diet but I am going to see a specialist soon so maybe they will suggest that. My thyroid is under control now and the Hashimoto's is better so the dizziness and all those other symptoms my doctor's think they have to do with lupus. What kind of sinus problems did you use to have? My feet and ankles are swollen up but they also think that is because of something else because they do not go blotchy. I have extreme hairloss and that has just started happening in the past couple weeks and they also think that is because of lupus. Do you have any thing like lupus or any other autoimmune disease?

[finepickle]

Hi Sportynik,

Also, many celiac people have poor food nutrient absorbtion due to damaged gut linings.  Celiacs are often vitamin B deficient.  They say that vitamin B deficiency can cause nerve damage and pain.  I take a liquid B-12 supplemnt for that.  It is just a liquid that you squirt in your mouth and hold it for 30 seconds so it gets absorbed in the mouth.
I also take a regular B vitamin pill with all the B vitamins for extra measure.  I use Spring Valley brand liquid B-12 (made b Nature's Bounty Co), but there are other brands available.

[finepickle]

Hi Sportynik,
There are many varying symptoms of celiac.  Celiac can lead to a variety of different autoimmune diseases.  I found out I had it because my sister looked up the symptoms of my thyroid condition and also my GI tract (digestive) symptoms.  I did go to a specialist to get tested later, although it took 4 months to get the appointment.  I went gluten free (GF) last Dec-07, and didn't get to see a specialist until May.  Since I went GF my symptoms have reduced, and I feel much better.   I  used to have sinus problems a lot.  I still have ringing in my ears that comes and goes.  My feet and ankles used to swell up a lot and turned all blotchy looking but have started to look kind of normal now.  And they feel warm now which is very different.

Ok, now thyroid by itself can cause a lot of different symptoms, hair loss being one, dizzness another, sweating, tiredness, confusion, the list just goes on.  The thyroid affects your body metabolism, so it can really throw things out of whack.  I looked up lupus and it does sound like a tough thing.  Have you tried any diet changes to see if they help you?  It is a fairly simple thing to do if it does help.  I know it made a big change in how I feel.

I have hair loss but also my father and 2 uncles had the same pattern baldness.  I haven't felt like it was related to celiac or thyroid but maybe there is a link.  Hmmm.

[sportynik]

Hi finepickle, with celiac disease do you have hair loss?

[sportynik]

Sorry I forgot you said something about a rash. What does that look like and where is it usually located?

[sportynik]

Thanks for commenting. How do you live with celiac is it really hard? How many different diseases do you have? Are you having alot of problems now? When were you diagnosed with celiac  disease? The symptoms that I have are dizziness, can't walk without walker, bad hedaches, trouble typing stiff hands, muscle aches, body aches, horrible neuropathic pain in legs (pins and needle sharp stabbing pain), dry mouth, dry eyes, nausea, chest pressure ( feels like my chest is sinking), short of breath, and trouble reading and concentrating. Does celiac disease go along with those?

[finepickle]

Hi Nik,

Just kidding about the fun, dumb joke I guess.  A gastroenterologist is one doctor who would check for celiac.  Some people see an endecrinolgist instead.  Celiac is a genetic condition, not a pathogen like a bacteria or virus.  I read somewhere that 1/3 of the USA population have some of the gene markers for celiac.  But only a fraction of them actually develop celiac.  They say that for some reason it becomes active in people due to some trigger.  Which can be about anything it seems, a cold, stress, anything.  What they mean is that people can go through life with no symptoms and then suddenly develop symptoms, although they have had the genes all along.  Other people have symptoms at birth though.  The biopsy is done with an endoscopy, they take samples from the samll intestine.  A gastroenterologist is the doctor for that test.

There is only one treatment for it, and that is the diet.  There are a few celiac research centers around, if you can find a center close to you that is the a good place for testing.  There is one at University of Maryland and another at  University of Chicago.  There is another one in CA at San Diego I think.  Your primary doctor should be able to do the celiac test panel though.  They just draw some blood and send it to a lab for testing.  Just make sure to ask them for a complete set of tests, like the list I posted.  Sometimes they only test for one antigen, and that is not good enough.

I do have trouble swallowing at times, but I think that is because of my thyroid problem.  I also get sweat head at night when sleeping, I wake up with a sweaty head sometimes.  That is also due to thyroid.  People with celiac can develop a variety of other autoimmune diseases.

Have a look at this list:

http://www.celiaccentral.org/What_is_Celiac_/Related_Diseases/98/

[sportynik]

Also what doctor deals with celiac disease?

[sportynik]

Thanks again for commenting. How do you get celiac disease? What do you mean celiac patients have more fun? With celiac disease do you have trouble swallowing without water? I do think I have lupus as well as my doctor's but the tests aren't coming out positive because of my steroids but I did test positive for antiphospolipid syndrome which is connected to lupus. Do you have any other advice for me? Please write back. Thanks.